Just wanted to say a quick thank you to those who read the blog and either commented or sent an email in the last few weeks. I really appreciate the kind words, feedback about Nathan's hematoma and the advice about signing him up for T-ball. It is so helpful to be reminded that we need to let him have some fun too. Even though the chance of a fracture or hematoma from a fall is highly likely for our boys, we have to let them take some chances. As much as I want to follow them around, make them wear helmets 24/7 or outlaw footie pajamas, I cannot (although the footie pajamas are mysteriously difficult to locate sometimes-wink wink). The difficulty is keeping them safe while trying to minimize the impact on their emotional and cognitive development. Anyway, thank you again for all of your kind words, thoughts and prayers, especially from complete strangers!
Also, I forgot to mention that prior to the fall and the hematoma, I was feeling so much better about Nathan because he can now........get off the last bus step by himself!! I was holding one hand while he jumped but he began jumping off without any help! I am beyond thrilled!
1.31.2012
1.18.2012
Family Talk
I have told several people this story so if you have heard it, please feel free to skip this one.
For Christmas Santa brought us a game called "Family Talk." It features little cards on a ring that can be asked at dinner and encourage interaction and conversations. We have played a couple of times (much to Mark's dismay) and a few weeks ago Libby read this question;
For Christmas Santa brought us a game called "Family Talk." It features little cards on a ring that can be asked at dinner and encourage interaction and conversations. We have played a couple of times (much to Mark's dismay) and a few weeks ago Libby read this question;
I winced because I was not sure how this would go but Libby began and said her freckles, Mark (who had to think for a long long time!) said his nose, I said my complexion and all eyes went to Nathan. There was an uncomfortable silence, he put out his hands and said...."nothin!" He looked so puzzled! Mark and I being the horrendous superficial parents that we are asked if he was sure it would be nothing. Mark suggested he might want to have hair. I suggested he might want his nose or fingers to look more like everyone elses. Finally he said that he wishes his veins wouldn't stick out so much. I wish Mark and I would have left him stick with his first answer but now we know. It isn't that big of a deal for him that he looks different! It is a bigger deal for the people around him, his parents and sister. If he keeps this attitude, people that he encounters aren't going to care about his appearance either. As parents we just want to make sure our boys are not defined by their appearance or disorder but by "the content of their character" per Dr. Martin Luther King.
Libby in charge!
I'm a little behind in the things I wanted to post about so here goes two late ones!
Libby, the fearless leader of the three decided to look up some information about Martin Luther King Jr. (It was MLK day at the time.)
So anyway, last night, Libby made up a little makeshift bed beside Nathan for Bennett. He is still in the crib across from the bunkbed and did not sleep on the floor, but we thought it was cute! Libby is never short of bright ideas!
Libby, the fearless leader of the three decided to look up some information about Martin Luther King Jr. (It was MLK day at the time.)
Libby has her own room but Bennett and Nathan share a room. For the longest time Libby cried and fussed and whined about the injustice of having her own room. "I'm the only one who doesn't have anyone to share a room!" After trying to convince her that she is lucky to have her own room she finally wore us down. Actually, we decided that this is one of the few things that we could actually change in her life when so many things are out of our control. We had the bunk beds but were only using the one twin bed for Nathan. We bought them before knowing we were going to be having two fragile children. So in the summer, we put the bunk beds together expecting that Libby would sleep up there a few nights and the move back to her own room. Of course as usual, we were wrong. She has not slept in her bed since. She falls asleep much more quickly with the comfort of her brothers in the same room. It used to take her hours to fall asleep because of anxiety with many trips out of the room for water, batteries for her flashlight, tissues and a mulitude of other excuses to seek comfort. We did draw the line when they asked if we could put up a pink border in the room but for now it is working.
So anyway, last night, Libby made up a little makeshift bed beside Nathan for Bennett. He is still in the crib across from the bunkbed and did not sleep on the floor, but we thought it was cute! Libby is never short of bright ideas!
1.17.2012
Tough Weekend
We had a tough weekend here at the Falcone household. Mark spent six hours at CHOP emergency room because Nathan developed another hematoma. About a week ago he fell in the living room and hit the side of his head on a rocking chair. He tripped over a book which I had left on the floor because I am trying to reorganize our house. So in my efforts to clean up the toys so we are not falling all over them, Nathan falls on one of them. He cried and had a scratch on his side on which he had most of his attention focused. I did not see him fall so don't know how hard he hit his head.
So fast forward to this weekend and on Saturday morning, he and Libby were playing doctor. Libby was examining his head and said that the side of Nathan's head was hurting him. When I took a look at his head and touched it lightly with my finger, he winced. So I summoned Dr. Mark and he discovered the soft squishy hematoma. We knew (or were hoping) it would be a wasted trip but knew that the right decision was to have him seen at CHOP. So Mark took him down and thankfully he does not have any kind of fracture, just the hematoma.
I was a mess for the six hours waiting to hear of the outcome. I could not concentrate on anything or get any of the many things done that needed to be done. He has not had one in so long that I even had crazy thoughts of him playing T-Ball this spring! They flyer says age 4 and up so I thought maybe he could participate! I even found him a pair of cleats in a very small size! (Little Wonders, the gym where Nathan took classes closed and he really misses the sports class.) That no longer seems like a good idea.
It is simply has made an already anxious mom, much more anxious. I have been driving Mark crazy checking to make sure he closes the gates to the stairs. I am constantly on edge. During my reorganization I moved lots of the kids toys upstairs because our living room is fairly small. But with them playing upstairs and listening to the clunking and crashing of normal play, I am second guessing that decision. I am wishing more and more that we had a one floor home.
Anyway, for some reason it feels like a step backwards that a simple fall results in a hematoma. I also do not know what if any problems result from multiple hematomas. Thanks for listening if you read this whole thing.
So fast forward to this weekend and on Saturday morning, he and Libby were playing doctor. Libby was examining his head and said that the side of Nathan's head was hurting him. When I took a look at his head and touched it lightly with my finger, he winced. So I summoned Dr. Mark and he discovered the soft squishy hematoma. We knew (or were hoping) it would be a wasted trip but knew that the right decision was to have him seen at CHOP. So Mark took him down and thankfully he does not have any kind of fracture, just the hematoma.
I was a mess for the six hours waiting to hear of the outcome. I could not concentrate on anything or get any of the many things done that needed to be done. He has not had one in so long that I even had crazy thoughts of him playing T-Ball this spring! They flyer says age 4 and up so I thought maybe he could participate! I even found him a pair of cleats in a very small size! (Little Wonders, the gym where Nathan took classes closed and he really misses the sports class.) That no longer seems like a good idea.
It is simply has made an already anxious mom, much more anxious. I have been driving Mark crazy checking to make sure he closes the gates to the stairs. I am constantly on edge. During my reorganization I moved lots of the kids toys upstairs because our living room is fairly small. But with them playing upstairs and listening to the clunking and crashing of normal play, I am second guessing that decision. I am wishing more and more that we had a one floor home.
Anyway, for some reason it feels like a step backwards that a simple fall results in a hematoma. I also do not know what if any problems result from multiple hematomas. Thanks for listening if you read this whole thing.
1.16.2012
Help Us Live
Whenever I talk about the boys condition I use the phrase "shortened lifespan." It's a nice way of saying that they will die at a young age. I have difficulty even writing those words let alone saying them. We do not know what that age will be but we know that they will not live into thier forties or fifties (at least not without a miracle, which is possible). In the last few weeks I have seen posters in bus stations and on the sides of buses with pictures of little kids who are currently undergoing cancer treatment with the caption, "Help Me Live" or something similar. I'm wishing we could get this collage of Bennett on the side of a bus with the phrase "Help Me Live" or "Help Me Get My Hair Back." or Help Me Get Big." or "Help Me Get My Teeth." or "Help My Body To Stop Aging Way Too Fast" I know there are fewer children that will benefit from a cure for Progeria than for pediatric cancer, but I think they are totally worth it!
Or of course, "Help US Live!"
1.14.2012
SAVE THE DATE
Who: Fighting for their Future/Progeria Research Foundation.
What: MacGerks is donating 10% of your check to The Progeria
Research Foundation when you mention you are there for the fundraiser.
When: Saturday, February 18, 2012 beginning at 4pm.
Level of Difficulty: Easy! All you have to do is take a break from cooking and enjoy waiter/waitress service. MacGerks is a family friendly restaurant so no babysitter required.
Reward: Enjoy a delicious dinner (and perhaps a drink) and help us get one step closer to finding a cure for our sons.
1.02.2012
Post-Holiday!
It is Monday night and we are gearing up for Tuesday's return to school and work. We hope you all had a wonderful holiday with family and friends. We enjoyed our Christmas and loved that both Christmas and New Years Day were Sundays! It gave us a few extra days to kick back in our pajamas and play with our toys. Christmas gifts included lots of American Girl, Spongebob and Cars 2. It was wonderful having Mark home for three and four day weekends. His job is pretty stressful and it has been a while since I have seen him able to relax and play with the kids. They ran around the house chasing each other and played lots of Wii games. I love to hear the giggling! Anyway we welcomed in 2012 with some friends at our house. We had yummy hot roast pork sandwiches, brownies and did sparklers and poppers on the front lawn at around 11pm.
Looking back, 2011 was a good year for us. I feel like I made a lot of progress emotionally and we certainly have been productive in the area of fundraising all done by some old and new friends (with our fearless leader Michelle at the helm). We are excited to see what 2012 brings us.
Typically we would be going to Boston this month for our six month visit but that will be pushed back due to the new clinical trial and fourth medication that will be added to the regimen. Like I mentioned previously, the researchers have indicated that this medication is less likely to work for our kids then for those with classic Progeria but we are hopeful. In fact it is what we are hanging our hats on these days. There will be no lapse in medications and we will return to Boston when that fourth medication has been approved for the next clinical trial.
In 2012 we are hoping to get closer to a cure for our boys so that they have fulfilled all of their dreams and goals! Thank you for all of your emotional, spiritual and financial help in 2011. We have been fortunate to experience amazing love and generosity from many people in our community and beyond. We thank you for loving our kids, embracing our family and Fighting for their Future.
Looking back, 2011 was a good year for us. I feel like I made a lot of progress emotionally and we certainly have been productive in the area of fundraising all done by some old and new friends (with our fearless leader Michelle at the helm). We are excited to see what 2012 brings us.
Typically we would be going to Boston this month for our six month visit but that will be pushed back due to the new clinical trial and fourth medication that will be added to the regimen. Like I mentioned previously, the researchers have indicated that this medication is less likely to work for our kids then for those with classic Progeria but we are hopeful. In fact it is what we are hanging our hats on these days. There will be no lapse in medications and we will return to Boston when that fourth medication has been approved for the next clinical trial.
In 2012 we are hoping to get closer to a cure for our boys so that they have fulfilled all of their dreams and goals! Thank you for all of your emotional, spiritual and financial help in 2011. We have been fortunate to experience amazing love and generosity from many people in our community and beyond. We thank you for loving our kids, embracing our family and Fighting for their Future.
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